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Zero symptoms, PSA 61 & Worrying DRE, Aged 52.

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User
Posted 28 Feb 2022 at 07:30

Thought it was a good idea to have a PSA test. No symptoms whatsoever. 3 weeks ago PSA of 61 came as a shock, followed by worrying DRE. 

Awaiting biopsy and scan / CT results. Big reveal scheduled for 8 March 2022. Urology nurse said I should prepare for stage 3 or 4 diagnosis, although nothing is certain etc.  

Whole family really feeling it. Trying to contain a sense of inevitability whilst hoping for anything better than a metastatic stage 4 prognosis.

Any advice during the excruciating waiting game welcomed. 

Thanks in advance everyone, wishing you all well  

 

User
Posted 28 Feb 2022 at 16:34

Originally Posted by: Online Community Member
I was told on Monday that Surgery was not an option for patients with PSA scores above 20 and yet yours was 34?

The recommendation coming from the MDT in my case was surgery was a slightly better option but as you can see from the very pertinent comments the choice between RP or HT/RT is a far from straight forward decision. Also the correlation between PSA level and cancer stage can have a fair margin of error. My recommendation would have been made on the whole of test results,  not just the PSA. It looks like I may have achieved the nerve sparing but until the histology comes back from what was taken out I won't know whether it was all successfully removed.

User
Posted 05 Mar 2022 at 11:03

Hi Matthew,

I can well understand the need for 24 hours to clear your head. I can also understand all the diverse reactions from people. One thing to know is that you will settle down in to the new normal.

Make the insurance claim, I would think it would pay out now, you have incurable cancer, but it is not terminal cancer yet.

Don't rush in to making life changing decision. Don't rush in to selling the house. If you have lived there for 18 years I presume you like living there. Moving assets in to cash when we are entering high inflation would be a bad move. Over the next three years start looking for the right size house for you wife and family to live in when you are gone, if the right house comes along then buy it.

Don't sell the businesses yet, you will get very bored sitting at home waiting to die.

For the time being change very little, OK the chemo and hormones may take a bit of a toll but for a lot of the time you will probably be functioning just as well as you were before the diagnosis.

I don't trust financial advisers they usually drive nice cars, and that means they are getting paid too much out of my money. But a good one, now that you have the luxury of knowing approximately when you will die, may be able to plan for a pension and how your wife can inherit the pot tax efficiently.

 

Dave

User
Posted 07 Mar 2022 at 22:14

good luck with your treatment matt a couple off months ago was talking to a guy at hospital his PSA had gone to 1300 and they gave him 2 years that was in 2011 he was still here battling away in 2022 and responding to his latest treatment never give up keep moving forward tons off support on here everyone looking out for each other with some remarkable people helping with  great knowledge off this desease we are all behind you as we are for each other πŸ‘

User
Posted 10 Mar 2022 at 11:41

Welcome to where no man wants to be Matt (im sure plenty have said that already!)
I was in the same mode of transport if not the same boat as you in 2019. See my profile for details but in brief, late 50s/no symptoms/PSA 55 at diag/bone mets/HT and up front chemo, no Radiotherapy offered though, so that may be something that's part of the standard plan a couple of years on?
Carried on the same as before diag to be honest, though Covid obviously put paid to that over the last couple of years. The Chemo was nowhere near as drastic as I was expecting, nor do I seem to have much in the way of side effects from the HT. Hoping for a long, hot summer with flat seas 😎
All I can say is, dont let it change your lifestyle for as long as possible?

Stay strong

Steve

Good luck to everyone coping with the insidious big C

User
Posted 28 Feb 2022 at 09:23
Drink and lots of sex! Nothing worse than the waiting.. once you have diagnosis and staging you can start the fight back..
User
Posted 28 Feb 2022 at 11:22

Hi Matthew,

It comes like a bolt from the blue when you are not expecting it. I know how I felt last November. And the wait to formal diagnosis is excruciating. You are just stuck in limbo. Lynn is quite right though, once you have got that diagnosis you can begin to make decisions and start to see a pathway forward. They are at least coming back fairly quickly with a diagnosis. I wish you the best of luck. Chris

User
Posted 28 Feb 2022 at 13:17

Originally Posted by: Online Community Member
I was told on Monday that Surgery was not an option for patients with PSA scores above 20

That's not true although it may be the policy of your urologist or CCG. 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2022 at 13:22

Originally Posted by: Online Community Member
If I get an option following diagnosis, I expect I'd go for the same.

 

People often think that in the early stages although it later becomes clear that it is not an obvious or straightforward decision. If for example, you have the option of surgery but it will be non nerve sparing, leaving you with permanent erectile dysfunction and a higher risk of incontinence, many men decide that radiotherapy looks more attractive. If the cancer has broken out of the gland and there is a good chance of cancer cells being left behind in the surgical site, radiotherapy with brachytherapy boost starts to look like a no-brainer.  

Also worth saying that with a PSA of 62, if this is cancer (which it may not be but probably is) the chance of curative surgery being offered is quite low. 

Edited by member 28 Feb 2022 at 13:24  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2022 at 14:42
In my case (PSA of 32) my urologist said to me "If I were in your position I wouldn't have surgery". When a urologist advises against surgery I think it's as well to listen!

Chris

User
Posted 28 Feb 2022 at 15:04

The worst part of all is the waiting for test results and biopsies....once you have results,you can decide on treatment. Good luck

User
Posted 28 Feb 2022 at 16:01

Originally Posted by: Online Community Member

Thought it was a good idea to have a PSA test. No symptoms whatsoever. 3 weeks ago PSA of 61 came as a shock, followed by worrying DRE. 

Awaiting biopsy and scan / CT results. Big reveal scheduled for 8 March 2022. Urology nurse said I should prepare for stage 3 or 4 diagnosis, although nothing is certain etc.  

Whole family really feeling it. Trying to contain a sense of inevitability whilst hoping for anything better than a metastatic stage 4 prognosis.

Any advice during the excruciating waiting game welcomed. 

Thanks in advance everyone, wishing you all well  

 

The waiting is just awful.  Try to keep busy but I’m sure it’s not far from your thoughts. We wanted to speed it up so we knew what we were dealing with, but wanted to bury our heads in the sand too. It’s not just the shock, but the disbelief too. There is lots of help on here as you’ve already found. Best wishes for 8th March 🀞

User
Posted 28 Feb 2022 at 16:38

Thanks, yep, this all makes sense and confirms what I am learning. I will take the best advice from the experts. 

Waiting is hard isn't it, really draining. Just hoping it's not metastatic stage 4. I'm resigned to the likely cancerous diagnosis but fearful my usual resolve might escape me if a stage 4 prognosis happens. Scary. 

Appreciate everyone's help and support. What a nice bunch you all are!!

User
Posted 28 Feb 2022 at 19:37

Hi Matthew, 

Sorry you find yourself here. Just wanted to wish you all the very best for the 8th and hopefully things won’t be too bad.

Always options though and like others have said I’m sure you’ll feel much better when you know for sure and have a plan. Our world fell apart initially but in a very different place now.

My husband was diagnosed with metastatic PCa, we got a second opinion though and they disagreed so this allowed him to have the operation. He did have spread to a lymph node which was taken away. It’s just a wait and see for us now.

Good luck and keep us all posted. You will get lots of support if you find you need it.

User
Posted 28 Feb 2022 at 20:25

Thanks Elaine, good of you to reach out. 

Hoping you and yours are as well as you can be.  Non of us would ever wish membership of this particular club but it does provide much valued benefits. 

Wishing you both well, will keep you and everyone updated. 

Take care x

 

 

User
Posted 28 Feb 2022 at 20:29

Your right Mathew we have all been through the waiting Elaine is right you will feel better when diagnosed and have a treatment plan if needed good luck hopefully things will be clearer soon πŸ‘

User
Posted 01 Mar 2022 at 20:15

Hi Matthew,

I can understand that thought process as I know we would be the same. It’s the absolute worst time and I’m sure you’ll possibly have a sleepless night, as we had many waiting for answers.

The good news is from tomorrow you’ll have a much better idea of what’s going on and regardless of what you are told things will start to move forward and you will have a plan in place. And although initially if the news isn’t what you want to hear it will of course be a difficult time for you and your family but things will get better.

Really wishing you all the very best for tomorrow, will be thinking of you. And will look out for updates.

Elaine

User
Posted 01 Mar 2022 at 20:58

All the very best for tomorrow. The agony of waiting is part of a deeper  challenge we all face, which is feeling a loss of control. Once you have some information to go on,  and a plan you can get your mind round, you can begin to put your own stamp on this. 

Best of luck 

 

User
Posted 01 Mar 2022 at 21:01

Matthew, take a pencil and paper to jot things down. 

Thanks Chris

User
Posted 01 Mar 2022 at 21:49

All the best for tomorrow and hope you will have a clear plan to get your head round.little steps x

User
Posted 01 Mar 2022 at 23:06

Good luck.

Dave

User
Posted 02 Mar 2022 at 14:52

Matthew that's not what you wanted to hear but there are plenty of examples on here of guys with a similar diagnosis who are still kicking hell out of life many years after their initial diagnosis.

The fact you are symptom free is good, it means you are starting from a strong base.

The difficult bit now will be deciding your treatment path. It helps if you have confidence in your oncologist. If you don't it's always worth a second opinion.

Suspect, it will be Hormones immediately, maybe chemo and or RT too, maybe upfront Enzo or Apalutimide, your Onco should be on top of the latest best practice, make sure you ask about all of the above and understand the Oncos logic for whatever he recommends.

OR you can chose to do nothing (as you are symptom free) like Chris has for many years..

Edited by member 02 Mar 2022 at 14:54  | Reason: Not specified

User
Posted 02 Mar 2022 at 15:23

So sorry to read your diagnosis Matthew. There are some wonderfully kind people on this forum with great advice. Hope you find the online community helpful.

User
Posted 02 Mar 2022 at 15:26
Not the news you wanted Matthew but you now know where you stand and can start taking treatment options.

If you want a chat pm me.

John

User
Posted 02 Mar 2022 at 23:16

Well Matthew, that is not very good. Sorry this has happened at quite a young age. (I was also 53 and G9, but fortunately only T3). To offer as words of comfort "oh well, you'll almost certainly live at least five years" is hardly reassuring. I could also point out that one of our members has been running ultra marathons for several years after a T4 diagnosis, and another is 15 years post diagnosis. So certainly a life changing diagnosis, but tomorrow you've got to get up put one foot in front of the other and get on with your life. Treatments are getting better, things may not be as bad as they must look now.

Dave

User
Posted 03 Mar 2022 at 07:36

Well said Dave keep moving forward Mathew treatment getting better all the time none off us suffering from this terrible desease know really how things will unfold we just hope for the best hopefully your treatment will start ASAP πŸ‘

User
Posted 03 Mar 2022 at 12:30
Definitely not what you wanted to hear Matthew, but as others have said, this forum is a great source of help and support. You have every right to grumble, don’t be too hard on yourself. It’s difficult to digest. I hope when you have a full set of results your medical team will spring into action with a treatment plan. As franci1 has said you are symptom free so that’s a good base Take each day at a time. X
User
Posted 04 Mar 2022 at 00:13

So sorry to read this Matthew. It’s not the news that you wanted but definitely so much that can be done. It is obviously a really difficult time for you and your family, hopefully when you have all the final details and a plan things will seem more positive for you. It is a really good thing that you have no symptoms. I always remember initially saying to Rob (who had no symptoms either) that our main aim going forward was just to keep him feeling fit and well and that’s all that matters, so I focused on diet, fitness and mental health and so far he has never felt unwell at any point. Take care Elaine

User
Posted 05 Mar 2022 at 09:00
It's the diagnosis that counts for serious illness cover not the symptoms..

Is the Radiotherapy to the prostate and the limited number of metastasis?

User
Posted 06 Mar 2022 at 23:42

Hi Matthew,

Found the profile of the marathon runner I mentioned in a previous post: https://community.prostatecanceruk.org/default.aspx?g=profile&u=17723 . he was given about two years: still here 7 years later, and running marathons. (BTW kev if you're reading this glad you're OK, you hadn't posted for nine months I was worried you'd popped your clogs; occupational hazzard on a cancer forum).

Dave

User
Posted 11 Mar 2022 at 07:19
Re the RT its cutting edge and is proven to improve outcomes even at stage 4. As you don't have many Mets they may be targeting those to. Ask your onco if they can and why not if they say no.
User
Posted 11 Mar 2022 at 21:26
Hi ,good luck with your treatment,my OH Gary was PSA 23 4+5 spread to lymph nodes aged 55

He had early chemo and now on Abi and Enzo as part of stampede trial .

He was diagnosed nearly 6.5 years ago , he is still working full time . Life is different to what it was but we still enjoy holidays and are about to welcome our 6th grandchild that keeps us on our toes .

Best wishes

Debby

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User
Posted 28 Feb 2022 at 09:23
Drink and lots of sex! Nothing worse than the waiting.. once you have diagnosis and staging you can start the fight back..
User
Posted 28 Feb 2022 at 09:31

Thanks for the advice 😊. 

Just checked out your story, while each individual experience is unique, your approach is inspiring.

Wishing you all the best, appreciate you taking a moment to reply. 

User
Posted 28 Feb 2022 at 11:22

Hi Matthew,

It comes like a bolt from the blue when you are not expecting it. I know how I felt last November. And the wait to formal diagnosis is excruciating. You are just stuck in limbo. Lynn is quite right though, once you have got that diagnosis you can begin to make decisions and start to see a pathway forward. They are at least coming back fairly quickly with a diagnosis. I wish you the best of luck. Chris

User
Posted 28 Feb 2022 at 12:23

Hi and thanks for this Chris. 

I've read your story and I'm impressed with your knowledge and pragmatism. Hope you continue to get better from surgery. 

I was told on Monday that Surgery was not an option for patients with PSA scores above 20 and yet yours was 34? If I get an option following diagnosis, I expect I'd go for the same.

I'm feeling fortunate that, as you say, I'm whizzing through the tests and scans and will at least have confirmation either way in about a week.

Wishing you well, thanks for reaching out.

Matthew 

User
Posted 28 Feb 2022 at 13:17

Originally Posted by: Online Community Member
I was told on Monday that Surgery was not an option for patients with PSA scores above 20

That's not true although it may be the policy of your urologist or CCG. 

 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2022 at 13:21

Thanks Lyn, reassuring to know. I admit I felt at the time it seemed more like a policy guideline than a clinical restriction. 

User
Posted 28 Feb 2022 at 13:22

Originally Posted by: Online Community Member
If I get an option following diagnosis, I expect I'd go for the same.

 

People often think that in the early stages although it later becomes clear that it is not an obvious or straightforward decision. If for example, you have the option of surgery but it will be non nerve sparing, leaving you with permanent erectile dysfunction and a higher risk of incontinence, many men decide that radiotherapy looks more attractive. If the cancer has broken out of the gland and there is a good chance of cancer cells being left behind in the surgical site, radiotherapy with brachytherapy boost starts to look like a no-brainer.  

Also worth saying that with a PSA of 62, if this is cancer (which it may not be but probably is) the chance of curative surgery being offered is quite low. 

Edited by member 28 Feb 2022 at 13:24  | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Feb 2022 at 14:42
In my case (PSA of 32) my urologist said to me "If I were in your position I wouldn't have surgery". When a urologist advises against surgery I think it's as well to listen!

Chris

User
Posted 28 Feb 2022 at 15:04

The worst part of all is the waiting for test results and biopsies....once you have results,you can decide on treatment. Good luck

User
Posted 28 Feb 2022 at 16:01

Originally Posted by: Online Community Member

Thought it was a good idea to have a PSA test. No symptoms whatsoever. 3 weeks ago PSA of 61 came as a shock, followed by worrying DRE. 

Awaiting biopsy and scan / CT results. Big reveal scheduled for 8 March 2022. Urology nurse said I should prepare for stage 3 or 4 diagnosis, although nothing is certain etc.  

Whole family really feeling it. Trying to contain a sense of inevitability whilst hoping for anything better than a metastatic stage 4 prognosis.

Any advice during the excruciating waiting game welcomed. 

Thanks in advance everyone, wishing you all well  

 

The waiting is just awful.  Try to keep busy but I’m sure it’s not far from your thoughts. We wanted to speed it up so we knew what we were dealing with, but wanted to bury our heads in the sand too. It’s not just the shock, but the disbelief too. There is lots of help on here as you’ve already found. Best wishes for 8th March 🀞

User
Posted 28 Feb 2022 at 16:34

Originally Posted by: Online Community Member
I was told on Monday that Surgery was not an option for patients with PSA scores above 20 and yet yours was 34?

The recommendation coming from the MDT in my case was surgery was a slightly better option but as you can see from the very pertinent comments the choice between RP or HT/RT is a far from straight forward decision. Also the correlation between PSA level and cancer stage can have a fair margin of error. My recommendation would have been made on the whole of test results,  not just the PSA. It looks like I may have achieved the nerve sparing but until the histology comes back from what was taken out I won't know whether it was all successfully removed.

User
Posted 28 Feb 2022 at 16:38

Thanks, yep, this all makes sense and confirms what I am learning. I will take the best advice from the experts. 

Waiting is hard isn't it, really draining. Just hoping it's not metastatic stage 4. I'm resigned to the likely cancerous diagnosis but fearful my usual resolve might escape me if a stage 4 prognosis happens. Scary. 

Appreciate everyone's help and support. What a nice bunch you all are!!

User
Posted 28 Feb 2022 at 16:43

Yeah that makes total sense. These calls are based on many complex and individual factors and PSA is only one aspect. Well said. 

Let us know how you get along Chris after the histology results are shared. 

All the best!

User
Posted 28 Feb 2022 at 16:46

Thanks. It's comforting to hear empathetic experiences from you. This is such a unbelievable and frightening journey. Still, you don't need to look too far afield to see so many people in more precarious situations. 

User
Posted 28 Feb 2022 at 19:37

Hi Matthew, 

Sorry you find yourself here. Just wanted to wish you all the very best for the 8th and hopefully things won’t be too bad.

Always options though and like others have said I’m sure you’ll feel much better when you know for sure and have a plan. Our world fell apart initially but in a very different place now.

My husband was diagnosed with metastatic PCa, we got a second opinion though and they disagreed so this allowed him to have the operation. He did have spread to a lymph node which was taken away. It’s just a wait and see for us now.

Good luck and keep us all posted. You will get lots of support if you find you need it.

User
Posted 28 Feb 2022 at 20:25

Thanks Elaine, good of you to reach out. 

Hoping you and yours are as well as you can be.  Non of us would ever wish membership of this particular club but it does provide much valued benefits. 

Wishing you both well, will keep you and everyone updated. 

Take care x

 

 

User
Posted 28 Feb 2022 at 20:29

Your right Mathew we have all been through the waiting Elaine is right you will feel better when diagnosed and have a treatment plan if needed good luck hopefully things will be clearer soon πŸ‘

User
Posted 01 Mar 2022 at 20:04

Hi everyone,

Not sure what to make of this but I was called late afternoon today by the hospital asking that I meet with the oncology nurse tomorrow morning at 9am. The original meeting was scheduled for next Tuesday 8th March. It appears all my incredibly fast tests, scans and biopsies were processed and assessed just as quickly.

Bringing it forward could be nothing, could be something, who knows? My wife's and my own immediate natural response was "that's gotta be a bad sign" but thankfully that feeling has tempered since the call. It's amazing how single moments like tomorrow's conversation can have such lasting consequences. Such is life. At least I don't have to wait another worrisome week πŸ˜…

I'll be sure to let you know what the scores on the doors are tomorrow!

Hope you're all bearing up.

Matthew

Edited by member 01 Mar 2022 at 20:06  | Reason: Not specified

User
Posted 01 Mar 2022 at 20:15

Hi Matthew,

I can understand that thought process as I know we would be the same. It’s the absolute worst time and I’m sure you’ll possibly have a sleepless night, as we had many waiting for answers.

The good news is from tomorrow you’ll have a much better idea of what’s going on and regardless of what you are told things will start to move forward and you will have a plan in place. And although initially if the news isn’t what you want to hear it will of course be a difficult time for you and your family but things will get better.

Really wishing you all the very best for tomorrow, will be thinking of you. And will look out for updates.

Elaine

User
Posted 01 Mar 2022 at 20:42

Hopefully good news tomorrow keep in touch loads of clever and helpful people on here πŸ‘

User
Posted 01 Mar 2022 at 20:58

All the very best for tomorrow. The agony of waiting is part of a deeper  challenge we all face, which is feeling a loss of control. Once you have some information to go on,  and a plan you can get your mind round, you can begin to put your own stamp on this. 

Best of luck 

 

User
Posted 01 Mar 2022 at 21:01

Matthew, take a pencil and paper to jot things down. 

Thanks Chris

User
Posted 01 Mar 2022 at 21:49

All the best for tomorrow and hope you will have a clear plan to get your head round.little steps x

User
Posted 01 Mar 2022 at 23:06

Good luck.

Dave

User
Posted 02 Mar 2022 at 13:53

Hi everyone,

Well, our worst fears have just been realised in the last few hours. 

I am officially Stage 4 Gleason 9 with spread to the pelvis, pubic bone and spine T5 vertebra (at least). I will need a further full CT scan to make sure they've identified everything. The appointment was itself worryingly mishandled too, which wasn't helpful. Anyway, that doesn’t change my new reality.

It's seems surreal that in the space of 3 weeks or so, with still no symptoms aged just 52, from a random PSA test for prudence sake we now find ourselves in a life-limiting situation. Life isn't fair I know, and I shouldn’t complain too bitterly as there are so many less fortunate that me, but today of all days I think I'll give myself a little room for a grumble!

Any advice for this next phase always welcome.

All my best to you all,

Matthew

 

 

 

User
Posted 02 Mar 2022 at 14:52

Matthew that's not what you wanted to hear but there are plenty of examples on here of guys with a similar diagnosis who are still kicking hell out of life many years after their initial diagnosis.

The fact you are symptom free is good, it means you are starting from a strong base.

The difficult bit now will be deciding your treatment path. It helps if you have confidence in your oncologist. If you don't it's always worth a second opinion.

Suspect, it will be Hormones immediately, maybe chemo and or RT too, maybe upfront Enzo or Apalutimide, your Onco should be on top of the latest best practice, make sure you ask about all of the above and understand the Oncos logic for whatever he recommends.

OR you can chose to do nothing (as you are symptom free) like Chris has for many years..

Edited by member 02 Mar 2022 at 14:54  | Reason: Not specified

User
Posted 02 Mar 2022 at 15:23

So sorry to read your diagnosis Matthew. There are some wonderfully kind people on this forum with great advice. Hope you find the online community helpful.

User
Posted 02 Mar 2022 at 15:26
Not the news you wanted Matthew but you now know where you stand and can start taking treatment options.

If you want a chat pm me.

John

User
Posted 02 Mar 2022 at 23:16

Well Matthew, that is not very good. Sorry this has happened at quite a young age. (I was also 53 and G9, but fortunately only T3). To offer as words of comfort "oh well, you'll almost certainly live at least five years" is hardly reassuring. I could also point out that one of our members has been running ultra marathons for several years after a T4 diagnosis, and another is 15 years post diagnosis. So certainly a life changing diagnosis, but tomorrow you've got to get up put one foot in front of the other and get on with your life. Treatments are getting better, things may not be as bad as they must look now.

Dave

User
Posted 03 Mar 2022 at 07:36

Well said Dave keep moving forward Mathew treatment getting better all the time none off us suffering from this terrible desease know really how things will unfold we just hope for the best hopefully your treatment will start ASAP πŸ‘

User
Posted 03 Mar 2022 at 12:30
Definitely not what you wanted to hear Matthew, but as others have said, this forum is a great source of help and support. You have every right to grumble, don’t be too hard on yourself. It’s difficult to digest. I hope when you have a full set of results your medical team will spring into action with a treatment plan. As franci1 has said you are symptom free so that’s a good base Take each day at a time. X
User
Posted 04 Mar 2022 at 00:13

So sorry to read this Matthew. It’s not the news that you wanted but definitely so much that can be done. It is obviously a really difficult time for you and your family, hopefully when you have all the final details and a plan things will seem more positive for you. It is a really good thing that you have no symptoms. I always remember initially saying to Rob (who had no symptoms either) that our main aim going forward was just to keep him feeling fit and well and that’s all that matters, so I focused on diet, fitness and mental health and so far he has never felt unwell at any point. Take care Elaine

User
Posted 04 Mar 2022 at 12:42
Hello all - I needed 24 hours to get my head and heart in order and support my wife, kids and extended family who are all, like me, shell shocked. Some are angry, some are being brave, others are asking for miracles but all are just sad.

I saw the consultant yesterday evening for the first time (the diagnosis was delivered by a nurse the day before who was very unfamiliar with my file, treatments etc.) so it was good to sit down with him. Stage 4 G9 with three sites in my spine, pubic bone and right hip bone. An average prognosis he said was 5-6 years, could be more or less etc. We all respond to treatment differently of course. That was not a shock and part of me was worried he would say less than that given the spread. I plan to follow your encouraging suggestions here and push hard to extend my life (and quality of life) for longer than the "average"...Just hope I am up to the challenge ahead.

Today I start HT (tablets for 2 weeks), in a fortnight Chemotherapy starts, followed by Radiation Therapy, and probably the same cycle repeats. I will know more when I meet with my new clinical lead, the Oncologist.

The biggest thing for me now is worrying about financial security for my wife and family once I am gone (and during the treatments). This is a major source of pain and anxiety for many of us who are too young to have fully contributed to a pension etc. My wife is and has always been a stay at home mum so I need to get my skates on to get my businesses ready for sale and downsize my home of 18 years. I do have a Serious Illness Cover Policy with Vitality that I am lead to believe (having just started the claim process) will pay out for Stage 4 cancer but I worry, as i have no symptoms as yet, they may resist paying out.

Has anyone any advice in terms of Serious or Critical Illness insurance claims?

I wanted to thank you, each of you, for taking the time to extend the hand of friendship and care. I would like to do the same going forward. This is a wonderful stage where the very best of human nature is displayed.

Matthew

User
Posted 05 Mar 2022 at 09:00
It's the diagnosis that counts for serious illness cover not the symptoms..

Is the Radiotherapy to the prostate and the limited number of metastasis?

User
Posted 05 Mar 2022 at 11:03

Hi Matthew,

I can well understand the need for 24 hours to clear your head. I can also understand all the diverse reactions from people. One thing to know is that you will settle down in to the new normal.

Make the insurance claim, I would think it would pay out now, you have incurable cancer, but it is not terminal cancer yet.

Don't rush in to making life changing decision. Don't rush in to selling the house. If you have lived there for 18 years I presume you like living there. Moving assets in to cash when we are entering high inflation would be a bad move. Over the next three years start looking for the right size house for you wife and family to live in when you are gone, if the right house comes along then buy it.

Don't sell the businesses yet, you will get very bored sitting at home waiting to die.

For the time being change very little, OK the chemo and hormones may take a bit of a toll but for a lot of the time you will probably be functioning just as well as you were before the diagnosis.

I don't trust financial advisers they usually drive nice cars, and that means they are getting paid too much out of my money. But a good one, now that you have the luxury of knowing approximately when you will die, may be able to plan for a pension and how your wife can inherit the pot tax efficiently.

 

Dave

User
Posted 06 Mar 2022 at 23:42

Hi Matthew,

Found the profile of the marathon runner I mentioned in a previous post: https://community.prostatecanceruk.org/default.aspx?g=profile&u=17723 . he was given about two years: still here 7 years later, and running marathons. (BTW kev if you're reading this glad you're OK, you hadn't posted for nine months I was worried you'd popped your clogs; occupational hazzard on a cancer forum).

Dave

User
Posted 07 Mar 2022 at 19:04

Hello everyone,

Thank you all for your timely replies, counsel and encouragement. What amazing wisdom and goodness.

My goodness, this is really hard to take in. As you all know from your own experiences, cancer impacts everyone around you. Our family is struggling to come to terms with our new reality. Our middle daughter is due to marry in the US in July which of course I cannot now experience in person due to the treatment regime. Instead we're holding a hastily arranged Ring Exchange Ceremony locally on 9 April and she can marry her fine American fiancé legally as planned in the summer. Already life has begun to change.

If I'm being brutally honest, I think I am just beginning to process that my life is now going to be a lot shorter than the average man in the UK. Scary to think I am statistically less likely to get into my 60s although I will try my best to buck the trend!

I've started Hormone Therapy x3 tablets per day (Cyproterone 50mg) prior to my fist HT injection on 16 March. I'm told I need to have a full body CT scan as the previous one focused on my pelvis and chest. Thereafter Radiation Therapy and then Chemotherapy although I'm not sure what form that will take yet. I have yet to meet the Oncologist.

Wishing you all well and thanks so much again for your invaluable help.

Matthew

User
Posted 07 Mar 2022 at 22:14

good luck with your treatment matt a couple off months ago was talking to a guy at hospital his PSA had gone to 1300 and they gave him 2 years that was in 2011 he was still here battling away in 2022 and responding to his latest treatment never give up keep moving forward tons off support on here everyone looking out for each other with some remarkable people helping with  great knowledge off this desease we are all behind you as we are for each other πŸ‘

User
Posted 10 Mar 2022 at 11:41

Welcome to where no man wants to be Matt (im sure plenty have said that already!)
I was in the same mode of transport if not the same boat as you in 2019. See my profile for details but in brief, late 50s/no symptoms/PSA 55 at diag/bone mets/HT and up front chemo, no Radiotherapy offered though, so that may be something that's part of the standard plan a couple of years on?
Carried on the same as before diag to be honest, though Covid obviously put paid to that over the last couple of years. The Chemo was nowhere near as drastic as I was expecting, nor do I seem to have much in the way of side effects from the HT. Hoping for a long, hot summer with flat seas 😎
All I can say is, dont let it change your lifestyle for as long as possible?

Stay strong

Steve

Good luck to everyone coping with the insidious big C

User
Posted 10 Mar 2022 at 17:13

Thanks  for the encouragement chaps. 

I’ll try and find out why I’ve been put forward for radiotherapy and let you know their reasoning. 


Appreciate hearing the story of men who are still around after a decade or more after diagnosis.  Thanks for sharing.  

It still feels surreal. Struggling to find the strength I need especially for my family. I know it’s early days yet…your example everyone is a BIG influence thank you  πŸ™  

Edited by member 10 Mar 2022 at 17:20  | Reason: Not specified

User
Posted 11 Mar 2022 at 07:19
Re the RT its cutting edge and is proven to improve outcomes even at stage 4. As you don't have many Mets they may be targeting those to. Ask your onco if they can and why not if they say no.
User
Posted 11 Mar 2022 at 21:26
Hi ,good luck with your treatment,my OH Gary was PSA 23 4+5 spread to lymph nodes aged 55

He had early chemo and now on Abi and Enzo as part of stampede trial .

He was diagnosed nearly 6.5 years ago , he is still working full time . Life is different to what it was but we still enjoy holidays and are about to welcome our 6th grandchild that keeps us on our toes .

Best wishes

Debby

User
Posted 11 Mar 2022 at 21:32

Good to hear from you Debby and even better to hear about Gary doing well after over 6 years. That’s very encouraging as we are still grappling with the shock of the advanced PCa diagnosis. 

Please stay in touch. 

Wishing you all the best with everything and your little ones. 

 
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